The Loneliness Of A Special Needs Sibling

It’s just after 6:30pm and her brother has just had a seizure in the bath. While her mum pulls him out and dries him her dad rushes upstairs to help.

And she was left alone.

It’s 11am at the retail park and suddenly her brother has disappeared. Her mum shouts his name and runs to the lift knowing her brother loves them, while her dad runs to the door to make sure her brother hasn’t ran into the car park.

And she was left alone again.

It’s 2:30pm on a Tuesday afternoon and she is with mum and her brother at yet another hospital appointment. Her brother’s height is taken, his weight measured and the eye specialist looks into her brother’s eyes while talking to mum in words she can’t understand.

And it feels like she isn’t there at all, even though she is.

Life feels all about her brother. She can only go places if HE is well enough, if HE can cope with it, if there is provision for disabled children. She hears others at school talk about zoos, trampoline parks and ice-skating rinks but she has never experienced those. She could tell them about tonic clonic seizures, communicating with a non verbal brother or what an occupational therapist does. She knows that isn’t what anyone wants to hear about though.

So she just stays quiet.

She does her own thing. She finds her own way of coping. She is the epitome of resilience, the definition of bravery, the personification of inner strength.

But she’s lonely. So very lonely.

She’s typical of so many siblings lost in the shadows while the limelight shines on the sick sibling, the disabled brother, or the struggling sister.

Expected to carry on with homework while her brother screams, to try and watch TV without complaining while her brother has a meltdown, to still sleep while her brother bangs toys throughout the night because he sees no need for sleep.

These are the siblings whose loneliness we don’t like to see. We don’t like to admit that disability affects the siblings as much, if not more, than the child who is diagnosed. It makes us uncomfortable to think we have caused an innocent child to experience mental pain while we care for the physical pain of another child. We hope beyond hope that things will settle and one day we will ‘make it up to them’ for the times we couldn’t make their school play because their brother was sick or in hospital. But that day never seems to come.

So she just carries on.

Until one day she says ‘it feels like I am invisible sometimes.’

Then you realise the utter loneliness, the repeated rejection she had felt and the fear she experiences daily. You vow to change things but nothing, nothing, will take away her loneliness.

I promise you siblings, you are NOT invisible. You are the real hero’s in all this. You are the ones who’s smile keeps everyone going, whose humour brings life and whose strength inspires.

You may feel lonely but you are never alone.

I promise you so many other siblings understand and they have been where you are.

You got the raw deal here and I’m sorry.

This post first appeared here. Do check out my other blogs on Firefly (www.fireflyfriends.com) and my regular updates and thoughts on my Facebook page (faithmummy).

I Will Never Walk My Child To School

I’ll never walk my child to school

I get to buy him uniform. I get to pack him snacks for playtime and fill a bottle of fresh water for him. I get to buy him a nice warm winter coat, new footwear, and a nice new bag.

But I’ll never walk my child to school.

I’ll never get to wave to him as he joins his line for the first time. I’ll never get to say good morning to his friends, kiss him goodbye at the gate, exchange pleasantries with other parents or pop into the office with his forgotten pencil case.

I wish I could walk my child to school.

It’s not the biggest thing to want. It’s not expensive or overly time consuming or rare to see. I just want to hold his hand or walk beside him in the morning and at 3 o’clock like other parents get to do with their children.

I never had it at the nursery stage but somehow that didn’t seem quite as bad. He’ll grow up never seeing my face just before he enters school to be away from me for six hours. Whatever his day was like I won’t ever be the smile that greets him or the hand that takes his as he leaves school behind for another day.

He’s still young and he needs me. I should be walking him to school.

There’s a wonderful school so close to us. Not too big, not too small, with such a friendly, welcoming ethos. I should have been buying burgundy jumpers to match his sister and seeing him laugh with friends in the school playground minutes from my house. When I sit in the garden listening to the children in my daughter’s school play outside I close my eyes and dream that my son is there too, kicking a ball about, chatting to friends, sharing life.

Instead I say my goodbyes at the front gate handing my son over to strangers who change every academic year. I strap him in a car seat, kiss his tender little cheek and tell him I love him. He never waves back. He rarely even looks at me.

I long to walk him to school.

We would splash in puddles. We would laugh when the wind blows our umbrellas inside out. I would listen intently as he told me about his day, his lessons, and who was star of the week. He would nag me to leave him at the gate instead of the line as he got older and we would get excited in winter walking in snow and making footprints. I know this because I get to do all of that, and more, with his sister.

Walking your child to school is so much more than just a menial daily chore. It’s bonding with your child, giving them priceless security and routine, its allowing your child uninterrupted special time to de stress and transition from school to home. It’s being familiar with their school, knowing the office staff by name,smiling at their teacher and having a chance to sort things out quickly because you are right there where you should be.

Is it wrong that I want that for my son too?

To know he has arrived safely, to walk home myself feeling at peace, to know where he is and that he is safe, to feel comfortable with the people who are looking after him and teaching him.

I’ll never walk my child to school and that simple, everyday loss is so hard to deal with sometimes.

My son has complex needs so has to go by transport to school many miles from home. I correspond with the school via short sentences in a diary. I don’t know what door my child enters the school or exits or if he even lines up outside. I don’t get to see his playground, his friends, or the staff. I have to assume he has arrived safely and he is well even when the weather is awful or I hear of accidents on the route. I can’t pop in with a forgotten snack or a form and even when I call them my voice or name isn’t familiar.

I wish it was different but it’s not.

Please don’t take it for granted when you walk your child to school. Some parents, like me, will never know that simple joy.

Today is just another morning that I never walked my child to school.

I put him to bed some nights and cry


Loving my son is easy, living with him is not.
Some would say he is controlling, a bully, self centred and aggressive. These would all be correct.
He is also frustrated, anxious, stressed and agitated.
No anger course, or therapy or counselling will help him.
He is 8 and can not speak. He is still in nappies. He has no sense of danger. He can scream for hours, smear, attack and demolish all in one day.
Yet he can laugh a deep laugh that is so contagious he makes everyone smile. He can flap and find utter delight in lift doors opening for hours.
He is the apple of my eye and the delight of my heart but some nights I put him to bed and cry. 
I cry for the life he is missing out on: The lack of friends, the inability to read and write, the fact I have no idea when or if he will ever be toilet trained. I cry because he is misunderstood and judged so much. I cry because he can not tell me anything like how he is feeling or what he likes. I cry because he is so vulnerable and that scares me. I cry through exhaustion having to constantly guess what he wants and why he is so upset. I cry through years of sleep deprivation, lack of support and the stress that something as simple as an open door makes him throw himself down the stairs in distress.
I put him to bed and cry because I do not want him to see my tears. I never want him to feel he disappoints me. I never want him to feel rejected or unloved. 
But I need to let the tears out. Pretending this is ok is not helping anyone.
My son has severe autism and it is very hard. My son has neurofibromatosis type 1 and that scares me. My son is vision impaired and that worries me.
His list of diagnosis and difficulties is comprehensive. He requires 24 hour care and relies on me for everything. He will need care all his life and his condition is progressive and unpredictable.
He brings me great joy but caring for him exhausts me.
Loving him is easy, living with him is not.
I love him more than words can say but I put him to bed tonight and cried.

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